Friday, May 30, 2014

On June 15th a new web based publication will be released. This one called: Executive Functioning: A newsletter for senior leaders in human service organizations, is aimed at, well, senior leaders in human service organizations. Like Service, Support and Success: The newsletter for direct support workers, it aims to present information in a fun, easy to read style, about issues of importance to senior leaders. This publication will come out every 3 to 4 months and will be available for free by subscription. If you are interested in receiving the inaugural issue you can do one of two things.

1) email and request the first issue - then you can decide to subscribe or not
2) simply subscribe now

Please let me know which you'd like.

Subscriptions, or single copies, can be requested from dhingsburger@vitacls.org

I got to have fun at work yesterday. A nervous kind of fun, I'll admit. Vita is partnering with The Centre for Behavioural Health Sciences and Christian Horizons to put on a conference called 'Both Sides Now.' It's a conference where people with disabilities may come but they must bring a support provider; support providers can come but they must bring a person with a disability. The point of the conference is that we all have stuff to learn.

The two topics chosen for this conference (it's going to be the first of a series) are Self Esteem and Boundaries. So while people with disabilities are learning about having good self esteem, support people are learning about promoting healthy boundaries. Then while people with disabilities are learning about having, and respecting, good boundaries, staff are learning on how to encourage positive self esteem.

See.

Sounds fun.

My job is to start the day and then to help end the day as well. I get to do the first 15 minutes of the whole crowd together.

I've thought about this a lot.

Finally, last night I sat down at the computer to create the presentation I want to do ... and I had a blast. Inclusive keynotes are different to write and I've done them, maybe four times. They present unique challenges and I love the extra freedom that I have in creating the talk.

So now, right beside me at the computer here, sits the paper upon which I have written out what I expect to do.

It will fly, or not, succeed or not, but I know, however it goes - it's gonna be a blast to do.

Thursday, May 29, 2014

We headed out to a store where we needed to do some shopping. Joe needed some new shoes and we go to a store that give out Air Miles (or used to as we discovered). The store is only accessible because I'm a really, really good driver. The entrance way is made narrow by those anti theft things and it's doable but difficult.

Arriving at the door we were surprised to find that they'd installed a automatic door opener.

Surprised again on entry to see that the entrance was wide open without a barrier in sight.

I sailed in.

We found shoes and at checkout I asked about the new entrance saying that it was much more welcoming for me as a customer with a disability.

She said, and stores should pay attention here, 'We wanted to be more accessible but all of our customers say that this is so much better, much more inviting.'

Tuesday, May 27, 2014

Yesterday we had a conversation, in a pub, with someone who was talking about transatlantic cruises. This is something I've always wanted to do, I think it would be astonishing and incredibly relaxing to cross an ocean in a great big boat. This fellow goes on cruises at a rate and frequency which is a little astonishing and as a result he knew a lot about the boats and the entertainment offered.

As he was telling us about the 'buffet' I retreated into myself to wait. Everyone who goes on a cruise ship talks about the buffet, always at some length, so instead of listening I was getting ready to ask about issues regarding accessibility. I zone back in when the conversation about plates with piles of food seems to be ending. But before I could ask, he shifted into another topic about the boats so I listened, and waited.

Suddenly he is talking about going into one of the bars on the boat and finding it full of people with disabilities. He said it was like a cafe at Lourdes. "There were scooters and walkers and canes and crutches everywhere!!" He laughed and laughed. Then he moved on to telling us about a woman with a disability who was on one boat ... and in order for us to understand what she looked like he leaned back, dropped his head, opened his mouth and made kind of a groaning noise. The story he was telling was about her wheelchair and how she used it on the boat.

He noticed that I wasn't laughing at his little display, his little funny mocking performance.

I just looked at him.

And looked.

And looked.

I didn't say a word.

I wanted him to register that he just made an insulting display about disability to a disabled guy.

He did.

I think sometimes when people do this they do it with a 'you're not really one of them so you can join in at mocking them' sense of conspiracy. I've had it happen from co-workers, years ago, who wanted to include me in nasty jokes about 'lisping and mincing' gay people - their offer to me was 'we'll exclude you and keep you safe from our mocking because you are more like us than like them - right?'

I didn't take the offer then.

Back then I used a lot of words.

Now, I know, when silence is sometimes the best, the very best, response.

Monday, May 26, 2014

We got to see the girls this Sunday. The journey had them taking first the bus, then the subway, then walking the few blocks over to our place. We appreciated the effort. Joe and I vowed that we wouldn't be getting into a car until I had to go back to work. It was a quick visit but it was a lot of fun.

We went out for lunch and then I asked everyone if they would go over to a store with me because I had to pick up a gift that had been ordered for a going away present at work. It was a beautiful day so everyone agreed to the short walk. I scooted over ahead of everyone to get the paperwork done so the wait wouldn't be too long for the girls.

It turned out that we had to wait 20 minutes, long story, not relevant, but that turned out OK because the girls quickly discovered, by the back wall, that they'd set up a play area for kids. There were doll houses and a mini play kitchen and a wide and diverse group of dolls. The wait flew by and the girls both were willing to stay and play a little longer.

Both Ruby and Sadie still like rides on my power wheelchair. And, wow, they can laser detect the exact midpoint, which, when crossed, one gets a millimetre ride longer. So, we talked, the girls and I about where that midpoint was and agreed to meet there.

Sadie took the first ride. We went fast and I did a bit of fancy driving around other pedestrians which she thought was wonderful. She was wearing her cowgirl hat and jeans and boots and was so happy with them and with how she looked that she waved to anyone that looked our way. Almost to a one, they waved back.

When we got to the corner, the diagonal light was green so we zipped across the intersection north / south and west / east at the same time. As I came up the on the south east corner, I had to be careful. A very old homeless man was laying on a piece of cardboard on the ground. He had a dirty blanket over top of him and as he lay there his hand is held out. In his had isn't a cup, as you might expect, but instead a margarine top lid. It's shallow and the change bounces but he catches it nimbly. He's often on that corner, it seems to be his spot. I hadn't any money with me, so I told him that I was 'out of change today' and wished him well. He blessed me.

I can go way faster in my chair than the others can walk so I set Sadie down and then we turned to wait for them to come. Sadie said she was a little tired, this is our standard, agreed upon, hint. I asked her if she wanted to sit up with me in the wheelchair until everyone was back. Her hands went straight up and then we sat and waited.

Sadie chatted about a couple things and then said, "That man is on the ground." I agreed that that's where he was. She said, "Why is he there." I told her that he was homeless and didn't have any where else to stay. "He doesn't have a bed somewhere?" she asked shocked. "No, probably not."

We were quiet for a second and then Sadie asked, again, "Why is he there?" She seemed distressed, which, I suppose, is the appropriate emotion to be having. I rummaged around in my head and came up with nothing, so I said something stupid, "He doesn't have a mommy and a daddy to help keep him safe." Sadie thought, "And he doesn't have brothers or sisters either?" I said, knowing I'd gone down the wrong path, "I don't know, probably not."

Across the way we saw Mike and Joe and Ruby arrive at the corner and wave to us. Sadie and I waved back. Then, not wanting to leave the conversation, Sadie said, "It doesn't matter if he doesn't have a mom or a dad or a brother or a sister, he should still have a bed."

I agreed.

Then it was Ruby's turn for a ride, we waved goodbye and sped off towards home.

Sunday, May 25, 2014

Sitting on the desk in front of me, like little dead things, are the business cards of managers and customer service directors. There are four. That's a relatively low number for a two week trip, but even so, four is four and four seems like too many.

Each one of them represents a situation or an interaction or a lack of anticipated access from the experience of just being out in the world as a traveller combined with, for people with disabilities, just being out in the world at all.

In each situation, I promised myself that I'd write a letter or an email on my return. But now that I've returned, it all seems like so much extra work. I mean, after all, the trip is done, we are home, new demands are made on our time.

Yeah.

Even so, these cards sit there, waiting.

I begin to weigh which ones are the most important:

The one to the store manager, to be copied to the chain's customer service department, about the experience of going into a nice clothing shop to look at a shirt for Joe. We'd seen it in the window the day before and went back to see if, maybe, we wanted to buy it. When we entered, one of the clerks, a very thin, very tidy man, perfectly groomed, looked at me, opened his mouth in shock and then covered it in an exaggerated 'I can't believe you are in my store, we have nice things here,' look. He then waves over another clerk and together they size me up, value me down, and then make sly comments, whispered, to each other while laughing at me. Joe, oblivious, is looking at the shirt. I am wildly pleased that he chose not to buy it. I am proud of myself for not interjecting that experience into to day, moving on and letting Joe just enjoy shopping. I don't want it always to be about me, about my size, or about my disability.

That's one.

The one to the managers of an outdoor mall, newly built, that has the disability symbol on the door of every shop. Every one. Inside the stores, for the most part, have wide aisles and are designed for a nice freedom of movement. Lovely. But not one door. NOT ONE DOOR. Has an automatic opener. So I can get around the stores it's just that I can' get freaking in them. This is a NEW DEVELOPMENT. Yikes.

That's another.

The one to the manager of the store where a clerk treated me with incredible dignity and respect. This was a very high end store and I was making a very high end (for me) purchase. I've been in a similar store here in Toronto and was treated like a non-person and a non-customer. I only got attention there when I picked up a product and THAT was because they thought I was going to steal it. But, in this store on this trip, I entered through an auto door, was greeted and directed to where I wanted to go and then was served, and spoken to, like I was fully human and fully valued. I never got even the slighted sense that my chair, my weight, my lack of sartorial splendour changed anything in the clerks mind about who I was or was not as a customer.

That's another.

The fourth is about the appalling way we were treated when trying to board the plane. It ended in a humiliating entrance to the plane, a sense of being a bother and in everyone's way and a near fall which scared me badly. The flight attendants on the plane were so enraged by what happened that four of them, FOUR, came and asked me to please write and complain. They said that customers in general, and customers with disabilities, specifically, are often not treated well by the ground crew at the gate. Please write, they said again, as I left the plane.

That's the last one.

It's seems easy to write about it here on the blog, and this was my strategy. I thought if I sketched it out for you that I might be able to do some cutting and pasting and be on my way to having them done. So, I'll leave you now and get started. Any idea which I'm going to write first?

Saturday, May 24, 2014

I sat outside the apartment door while Joe scooped up the two weeks of mail that had accumulated while we'd been away working in California. In the end, once all the junk was removed, all that was left was 3 bills and a reminder from my doctor that it's 'poop on a stick' time of year again. That little yearly celebration comes around faster than any of the others, rah!

But once in, we both collapsed. I hadn't sat in a chair, other than my wheelchair, for two weeks. I sprawled out on my chair, feet up on the ottoman and felt like I'd been transported directly to heaven. First we talked mostly about dinner - deciding on beans on toast. Second we discussed ways to dive back into this time zone because next week is a working week. There's little time to adjust.

We hadn't been able to talk much on the plane, the turbulence was really, really bad, worse than I've experienced in years, and the plane, as a result seemed much louder than usual. So we resorted to the occasional, 'If the plane goes down, remember that I have always loved you,' glances. We noticed, to our amusement that everyone was doing it, the guy on the other side of the aisle gave me the, 'I think we're going to die now and I want you to know that I think we'd have been great friends.' The moment we touched down safely everyone went right back into their commuter shells and jostled and pushed to get out. All that to say, we hadn't talked.

WheelTrans brought us home - but again, it was one of the older buses and it rattled quite a bit. Not that I minded a single rattle because it was taking us, ever nearer, to home. So after dinner, when we'd talked about getting back into this zone, we talked for a minute or two about the trip. Not the work. The trip.

We had had to cancel a big trip earlier in the year, on doctor's orders, and I had to begin treatment for my leg. It was all very difficult and it was, on reflection, a horrid time. My doctor assured me, and he never, ever, exaggerated, that I should be able to resume travel once my leg was looking better.

The word 'should' is different than the word 'will.'

Now just back, we have proof positive that we 'will' be able to do that again. We had a wonderfully busy lecture and consultation schedule, four days on three days off (one was a travel day) and then four days on. At the same time there were several things going on at work here back home that had me busy first thing in the morning and then again after work. The work days, then, were very, very long.

But it all got done.

Everything.

Except.

I found that with the lecturing and consulting along with keeping up with my work load from here and, of course, fitting in things like 'doing some fun stuff' ... I simple had no time to fit in writing this blog. I am really happy to be here at the keyboard, back doing something I really like doing. The chair last night, the beans on toast and this post are all signposts ...

Wednesday, May 21, 2014

Two days ago, after work, I was simply exhausted. There had been problems with the audio-visual which stressed me out, and, of course it's been a fairly busy schedule. So, instead of going out with Joe after work, I choose to stay back in the hotel to rest. I did very little other than read, play games on the computer, after answering my work emails of course. I knew I needed to unwind and rest. It's rare for me to simply not go outside at some point in a day. Nevertheless, I pushed that need aside to indulge myself in just being 'in.'

Last night after work, I was itching to get out. I start feeling 'cooped' up fairly quickly, so I joined Joe and rolled myself to the car. It's nice to be presenting in the same hotel as we are staying, really nice, but it's nice to get out. We thought of places to go. We needed some things for the room so we went to a really nice and really big Safeway store near our hotel.

When I got in, Joe picked up a cart and we went shopping. There weren't a lot of people there so I could do what I needed to do. I needed my version of 'going for a run.' I set aim and went from one side of the store to the other, twice, up and down 6 aisles, and then from the check out to the car. My muscles were screaming because it had been a long distance, I had pushed myself fast with only short breaks for shopping, and, of course, I had to quickly turn and quickly break when someone came out the end of an aisle.

It felt good to get some physical movement into my day. It helps break my concentration from the work at hand AND it helps me sleep at night - too tied to worry about the next day. I know that others run through parks and along boardwalks ... me I need a good floor, a long stretch and a reasonably safe place to extend myself. For those of you who think that this might be dangerous for others. My fast, and your fast, are probably very different things. Even so, it feels like racing to me.

Got back to the hotel, feeling much better, got some oxygen in my lungs, had a pleasant ache in my arms and shoulders. And, of course, we'd picked up dinner for the room. All's well.

Monday, May 19, 2014

Joe and I arrived a bit early at our hotel so our room wasn't quite ready. We were asked to either wait in the lobby for 20 minutes or, if we wanted, tour around for a bit then come back. We decided to tour around. As we did we began to notice places where we'd been before, on our last trip to Eureka. We pointed out various sites, found the place where I did consultations last time, all the while chatting about our memories of being here before.

I was in my wheelchair last time we were here.

It struck me that I'm not 'newly disabled' any more.

It struck me that, for 8 years, I've been a wheelchair user.

Now when we look back at the past, we have to go a fair way back to 'Dave walking' since 'Dave rolling' is taking up a fair bit of space. In fact, I don't 'remember' walking very well. I know I did. I know Joe and I used to go for walks. I know that there was a time when I didn't look for curb cuts or worry about bathrooms and accessible spaces. There was a time when I was privileged to simply go where I wanted to go.

I reflected, though, that I still feel like I'm new to the life as a disabled person.

Not, it came as a bit of a surprise, because of the wheelchair. Adapting to getting around differently came within the first few months of transitioning. Those were hard months, for both Joe and I, really hard months. Figuring out the logistics of getting around in a wheelchair, me working on just the getting about in it, Joe working out getting about with it. Cars and trunks and planes and trains all had to be tried and figured. That took it's time, a lot of it was frustrating, but once done, it was done.

What still makes it feel like I'm new to the life as a disabled person is that I still haven't got a full handle on the social aspects of disability. How to deal with, figure and understand, have responses for the daily oddities of social interactions. I'm not here talking about the rude or mean or, even, cruel things that happen. I'm talking about the regular ordinary weirdness that happens when someone in a wheelchair enters a space. Like, yesterday; we were coming back to the hotel and a fellow walking on a wide, really wide, sidewalk, stepped back off the sidewalk, into gravel, to let us pass. We weren't even close to him, but he made this huge space. Like how I'm everybody's 'buddy'. Like how I must appear like a little boy because I'm spoken to like I'm six. Those things, and a thousand more, I'm still not used to. 8 years in and I'm still waiting to be an old hand at this kind of stuff.

But, even with all that, it was nice to drive around and remember being here before, being here in a wheelchair, knowing that I once worried, as we struggled to get used to the chair, that years on, the chair would just be part of the memories. That my life would flow as my life would flow. We got back to the hotel, checked into our room and set about doing all the stuff we learned to do 8 years ago to set up the room. It's just what we do.

Sunday, May 18, 2014

The battle was going on in my head as I approached him. Joe and I had just dined 'al fresco' having home made crates from a hot dog stand on the street. They have way higher class hot dog stands here! We were both in a good mood and decided that we'd walk a few more blocks looking at some of the shops on the street before we turned back towards the hotel.

When we crossed to the other side of the street, we turned round and headed back. As soon as we'd made the turn. I saw him. The cutest little boy laughing and talking with his mother. His wheelchair was obviously lovingly cared for. The frame was a deep, and quite beautiful, red, polished to a luster. The wheels, the spokes and the frame just shone.

It started.

'Should I?'

'Shouldn't I?'

'Should I?'

'Shouldn't I?'

I wanted to say something to the kid. Something about his wheelchair. Something friendly. Something that made a bit of a connection wheelchair user to wheelchair user. But I also didn't want to intrude on his day. I didn't know how he, or his mother, would take a casual remark from strangers.

Then I thought, 'But I'll bet they get casual remarks from strangers all the time, a wheelchair, any wheelchair, being a magnet for social inappropriateness.' My goal was to make a casual remark without being inappropriate.

So.

I did.

As we went by I said, 'I love the red frame of your wheelchair.' He turned, quickly to see who had spoken, and stared at me, in shock. I didn't think he was staring at me because of my size or for any other reason, he just looked at me, hard but with gentleness, as we passed. We were just going into a store, the door had been opened. When he called out:\

'I love the red! My dad polishes my chair every night! I can go anywhere in my chair!!!' His eyes were bright. Really bright! His grin was hug. Really huge!

Saturday, May 17, 2014

The place was packed, but people were 'Friday Night Friendly' and were quick to move their chairs so I could make it to a table for two in the back corner. Joe was finishing up with placing the order and then had to weave, like I did, through tightly packed tables to get to where I was sitting. I sat looking into the restaurant while Joe looked out towards the window. We waiting to hear Joe's name called over the loudspeaker indicating that our order was ready. Unfortunately Joe is a popular name here, I guess, because he had to go up four times before he was the 'right' Joe.

Even with the noise and the packed tables and the preponderance of Joe's we were having a nice time, as was everyone else. I soon noticed another wheelchair user come in, she made her way through to order and then found a table by herself. She, like me, is noticeable for reasons other than her chair. She had a facial difference and she was a large woman. I was impressed that she made barely a ripple of impact when she entered the restaurant. Most people seemed to be in party mood, most people seemed to be focused on their dinners, their friends and the night ahead.

Two tables away from us and two further tables away from the other wheelchair users there was a table with a young girl, maybe 10, here older sister 16 and their father. I saw it exactly the same time as the young girl did. The older teen snapped a photo of the woman with the multiple differences who was sitting quietly reading a book she had brought with her. The little girl was immediately angry.

"Delete that!!!"

"Delete that!!!"

"Delete that!!!"

The older teen wasn't listening, she was rapidly doing something on her phone while laughing. Dad wasn't paying attention much to anything but his burger. Finally, the young kid got frustrated and enlisted her Dad's assistance.

"Dad, she's going to take that picture and put it on the Internet. She's going to make fun of that woman. That's mean. It's cruel. You have to stop her."

I didn't hear what the father said, but the little girls face was full of frustration and disappointment.

"Stop trying to be our friend, our buddy, you're our DAD. Be a DAD. She's going to hurt someone. It's mean. People do this and people die, they kill themselves. IT's MEAN."

Dad, turned to her and told her to settle down. He then reached over and took the older daughters phone and deleted the picture. He apologized to his older daughter saying, after he looked at the picture and deleted it, "It was a really funny picture."

The little girl, looked at her dad like she was really seeing him, pushed her supper away and started to softly cry.

Thursday, May 15, 2014

I had just finished writing today's blog and was reading it to try and catch the errors that spell check lets by. Regular readers will know that, even that effort often goes for not. I'm not a great proof reader. Anyways as I read the words and then considered the content, I decided not to post.

At home I write about things that happen in my city or my neighbourhood. I write about people I come into contact with or conversations I have. I am in a much, much smaller town and I've written about someone I met who impressed me greatly.Unfortunately I didn't think 'this is bloggable' and therefore didn't ask. I knew my description of him would make him identifiable and I'm not going to do that without permission.

So today's blog is about there not being a blog because I want to respect the privacy of someone I met. I hope, against hope, that I'll see him again as we leave to go down to Elleryville for the weekend - and I can ask.

Wednesday, May 14, 2014

She told me
That I shouldn't be wearing
My soft green shirt
She said
It was too bright
She said
I was already to visible
She said
That now I could be really seen\
She said
She couldn't imagine that I wanted
To be seen
She said
She was only telling me
to be kind

I said
Her words didn't seem kind
I said
Her words didn't feel kind
I said
Her words were unwelcome
I said
I like my soft green shirt
I said
I know I am easily seen
I said
If people looked
They would
See that the green matched my eyes
I said
If she were truly kind
Truly caring
She would have noticed
My soft green eyes.

Tuesday, May 13, 2014

Yesterday we set up to do an abuse prevention class for people with disabilities. As we did so people trickled into the room and took their seats. Joe wrote up the 'ground rules' on the flip chart. One of them was: It's OK to disagree on some things.

A woman, Lynette, sitting at the front, read the rules as Joe wrote them. When she got to that rule, she said, "Some things? I can disagree with anything I want."

I spun round to look at what we'd been teaching for over twenty years.

She was right.

What we wrote implied that there were some thing beyond your right to disagree.

I may have to do things that I disagree with ... anyone who works for anyone doing anything knows that.

Here I was teaching about the right to disagreement to someone who disagreed with my statement about disagreement.

And she was right.

Both Joe and I looked at each other and decided to change it on the spot to 'It's OK to disagree.' Joe put a single, careful, line through the crossed out words so they could still be read. When we got to that part we talked about how Lynette's idea had change what we were teaching. Voice matters. So does a open space where disagreement and discussion are welcome.

Over twenty years doing things and still getting it wrong sometimes. That doesn't bother me. Because, I won't make that mistake again. There's aways room to be wrong, and there's always opportunity for learning.

Monday, May 12, 2014

I received a carefully worded email about something in yesterdays post regarding being in San Francisco. The writer said she didn't want to post the question on my blog and she didn't want me to take the question as a personal attack. Her questions was a simple one, "Is it appropriate on a disability blog to promote a a business that isn't accessible?" She was making reference to the Wing Lum restaurant that I'd mentioned in the blog post.

Before going back to the WHOA! let me answer that question first.

I admit that I thought about the issue of inaccessibility and asked myself exactly the same question that was posed to me in the email. In fact, I almost didn't mention the cafe at all. I decided, however, to go ahead and write it because - well - that's what happened. We've been going to the Wing Lum for years and it's part of every single trip to San Francisco. Their vegetarian options are amazing and their welcoming attitude is quite embracing.

Joe and I stumbled into the cafe, decades ago, long before I was a wheelchair user, quite drunk, took a corner table, and had a wonderful meal. We were giddy with youth and intoxicated with both alcohol and being on vacation in San |Francisco. The food was terrific, we could hear the chatter and the laughter from the bar, Reflections, which we just left and which was right next door. We are always creating memories, and that one is such a pleasant one.

We've gotten older, the whole area has changed drastically, but the Wing Lum goes on. We hadn't been to San Francisco for several years and just before leaving we looked it up on line to assure ourselves it was still there. It was and we were really pleased that the tradition it does continue.

This is maybe my third trip to San Francisco as a wheelchair user and, of course, The first time we went to San Francisco after becoming a wheelchair user we determined that we were still going to get food from the Wing Lum. We called them, we ordered, and we drove over to pick it up. The fellow that we see all the time speaks English haltingly but effectively and, once he knew I was now in a wheelchair, he explained all the things they could do to make sure we still got service. Not once did he act like my disability was anything more than something to be accommodated for. The building, an old one, isn't one that could be easily made accessible but, for me, all that mattered was that I was still welcome.

I didn't stop being friends with people who's homes were suddenly inaccessible to me. I didn't cut my life in half, taking huge scissors to separate before and after. I felt that stopping going to the Wing Lum would be a loss to me and require me to revalue my memories and my past history. I didn't want to do that. So, we still go.

There was one more small reason that I wrote about the restaurant yesterday. Joe and I are not really picture takers. Even though I used a picture yesterday on my post, I got it from the web. And because we aren't picture takers, this blog is kind of a verbal photo album of parts of our life. I want to remember this trip, and I want to remember our first day back in a city that I thought maybe I wouldn't see again. I wanted to be honest in what I wrote for you, yes, but for me too.

Now, to the WHOA!

The woman who wrote the letter said that after the post I wrote about the comments, which I thought suggested that disability prejudice is something I created by looking for it and that I put on the cloak of victimhood, she was a little nervous in leaving a question that could be seen to be critical of a decision that I made about going to an inaccessible place and 'promoting' it. I assure you, as I assured her, I loved the question. It needed to be asked.

I am not sensitive to questions or even criticism - in the whole history of this blog, I have had lively debates on several issues and discovered, shock, I'm not always right. The two comments that I wrote about, were different in a way that I can't really explain. I really don't want people to tip toe around me and my feelings. If you've got a question, ask it. If you've got a criticism, make it. Just remember that I there is a person on the other side of the computer screen and we'll all be good.

We had leftovers last night, and as is our new tradition, we bought enough for there to be leftovers tonight as well. New memories rising from old - ain't it great.

Sunday, May 11, 2014

Yesterday, in San Francisco, we went down into the Fisherman's Wharf area. We had some shopping to do and wanted to do it somewhere that just simply screamed "YOU ARE IN SAN FRANCISO!!" Both of us enjoyed the entire day yesterday. We enjoyed being back in a city we've visited so often and a city that we weren't sure if we'd see again. Some of you will remember that I had to cancel my trip to the United Kingdom this year because of some health complications and the resulting need for treatment. My heart near broke to let so many people down. I was downcast for weeks because, besides letting people down, there were people who I was so looking forward to seeing. It was a dark time indeed.

I was reassured that I'd be able to travel again.

But it's hard to hear reassurances when fear and doubt do battle with hope.

Getting on the plane, landing, getting into the rental car, driving to the hotel - all normal things became almost new again. And, I suppose they are. I am experiencing this trip, one of thousands, as brand new. It is the new start to the next part of my career. The first day of the rest of my life - there's something that I understand in a very real way.

So today we travel up to where we will be working for the week. We have the weekend back in San Francisco and then we travel up to where we will be working the following week. It's all laid out neatly for us, arranged for us by wonderful people who are even getting a kettle for me to use.

In the midst of all this, Joe has to put on his nursing cap, and follow through with care for me, as my treatment is still ongoing, but that's OK. There has been much progress and while I'm still healing, the best news is, oddly, I'm still healing.

We've got Wing Lum's Chinese food left over in the fridge.

We've wandered down Polk Street, the street where we hung out on many vacations.

We've seen Alcatraz, and it never looked more Alcatrazian as it did yesterday.

Saturday, May 10, 2014

Prejudice and discrimination are part and parcel of the experience of people with intellectual or physical disabilities or intellectual or physical differences.

I'm not sure that people recognize that the kinds of experiences, the micro, midi and maxi aggressions that come with the territory of disability are too diverse to list and too unrelenting to count. Sure we learn to cope but our coping on a daily basis doesn't mean that we've had days on end without experiencing some form of social violence or some kind of social belittlement during that day.

I am NOT an expert on the lives of all people with disabilities. But I am an expert on mine. I am an expert, then, on the very specific kinds of prejudice I run into and I am very, aware, of the extraordinarily high rate at which it occurs. I need to think about that when I think about my life and may plans.

I wrote a blog post yesterday about the anticipation and anxiety I have when having to put myself in situations where I need service from others. The more people I will meet, the higher the anxiety rises. Somebody who understood things about percentages told me that the risk rises. He didn't have to tell me, I knew.

I wrote a deeply honest blog about my fears of who I would meet and the choices they would make in how that service would be provided.

I was deeply honest about my anxiety - I've been worried for a week.

I was deeply honest about the sense that they have choices that I do not.

And yet, in my own comments, from my own readers I am told that I am 'cloaking my self in the role of victim' or it was suggested that 'when you go out looking for problems, you are going to find them.'

I usually like my comments but these two, anonymously made, stung me. No, more honest, hurt me.

I always feel uncomfortable writing true feelings about situations of great vulnerability like the one I faced yesterday ... air travel. I wanted to put that sense of vulnerability in the world.

I don't think that acknowledging that, as the world is full of prejudice and discrimination, the worry about experiencing it is cloaking myself in victimhood. I don't think that stating that others have choices that I don't comprises tying the cloak around my neck. I need to fly, they can be as bigoted as the get go and I've got to get by them and get on the plane. Here is were strong advocacy may be the right thing to do for the cause and the wrong thing to do to get on a plane.

The idea that those who experience the blunt end of prejudice and the sharp end of discrimination on a routine basis, go looking for it. This is the kind of thing that is said when women talk about sexism at work ... if you look for it you'll find it. Of course, because it's fucking there. I do not go looking for discrimination, I need not search behind the couch for prejudice. My wheelchair, and my difference, is like a huge magnet for hostile attitudes. It comes to me. I don't go to it - who would.

The kind of blaming the victim statements ... if you had happy attitudes they would lead to happy encounters ... um yeah, right .... if black people and women and gays had just been happy they'd have been voting, participating equally and have full access and equal protection under the law. Right.

Cloaking oneself in victimhood is so offensive and so hurtful to me that for the first time I thought, is it safe for me to be honest about my feelings here? I was horribly hurt by that remark. I do not live the life of a victim. I do not secede space that is mine. I speak up when necessary and though it's not constantly so, it is at a pretty high rate..

People with disabilities, like me, sometimes need to be around people who see that prejudice exists, who understand that situations of high risk of meeting or dealing with prejudicial attitudes cause anxiety, who wish to create a safe space of honest discussion of what it is to live in a world that isn't always, or maybe even often, or maybe even rarely completely safe for disabled people to enter and to participate.

At this point I keep thinking to myself. "Why did I tell them the truth about my fears and my sense of loss of control in the hands of another?" Well the answer was: I felt safe to do so.

Wednesday, May 07, 2014

I never really noticed, as I shouldn't ever notice, until I was nearly home. We had gone out after work to get a few things done. We are about to leave on a two week trip and the things that need to be done, and done quickly, are many. Trouble is, we haven't done this for awhile so we're a bit out of sync with organizing. So we set off with a list of errands and spent a couple of hours, pleasant hours, getting them done. Our last stop was at the little greengrocers near our place to pick up some fresh veggies for supper.

On the way home, I scooted head of Joe, giving my chair a chance to really take a run, blow the cobwebs out. As I turned towards the apartment building, I noticed, as I should never have to notice, that I'd been out for over two hours and nothing happened. Let's review because nothing means something in this case:

1) Every place we went was accessible and welcoming.

2) Everyone serving us spoke to me or to Joe depending on who was leading the interaction from Team Us.

3) No one on the street made a big deal about the wheelchair, no one took exaggerated steps out of my way even though they weren't in my way.

4) No one stared at me, made a loud joke about me, pointed and made a quiet remark to whomever they were with, no one.

5) People who stood in line with me respected my need for space and I didn't have to ask, and ask again, and ask again, for them to back up so I could turn my chair.

6) No Phone Walker Zombie had me veering around them to protect them from themselves and from running into my chair.

7) No one called me a name.

8) No one commented on my purchases at the grocery store, no 'good choice' for the veggies or a 'do you really need that' for the two chocolate bars we bought to put in a package to the girls.

9) No one told me how wonderful it was that I could get on an elevator with my chair.

10) No. One. Hurt. Me.

I shouldn't live in a world where it's notable that I'm treated simply as just another person doing an ordinary bunch of stuff. I shouldn't notice that I could get into a store. I shouldn't notice that I got equal service. I shouldn't notice that No One Hurt Me. But I do.

Tuesday, May 06, 2014

The bus drove through a neighbourhood of small, well tended and obviously well loved, houses. We stopped just outside a house where, when we pulled up, the curtains dropped and activity began. A small, elderly woman with quick movements came out the door and down the stairs. She set the walker she was carrying at right angles to the handrail at the bottom of the stairs. She then went back up.

Out the door came a man, a few years older, holding on to his wife's very strong arm. She guided him to the stairs. He came down sideways, one cautious step after another, holding on to the handrail to keep him upright, to keep him stable. Taking the last step, he reached for his walker, perfectly placed, and they made their way over to the bus.

They greet me when they get on. It's a long ride. They begin to talk in sad voices. Voices that wound around each other, voices that held on tight. They talked about the stairs. They talked about the stairs inside. They talked about the stairs outside. They talked about having to sell. Having to move. He was frightened of the stairs, of falling. She was frightened of his fear.

They'd looked at adaptions. They'd looked at modifications. But they didn't think they would work. They need a place where he no longer lives with fear of falling, and she no longer lives in fear of what falling would mean. "We had our babies in that house," he said. "They will love us no matter where we live," she said. "Yes, they are beautiful children," he said.

"Why don't they build houses for people to grow old in?" he asked her.

Monday, May 05, 2014

It must have looked like a ballet of politeness, a pas de deux of graciousness. Joe and I had just got into our places when the first of a long line of people using wheelchairs, scooters and walkers started to arrive. I don't think I've ever been in a theatre with so many others with disabilities. Where I was seated, in the aisle because the disabled seating really sucks - it's way up back and it's on a steep slope - was fine for other patrons to get by but left too narrow a space for anyone else using any kind of mobility devise.

I caught the eye of a woman using a walker and told her that I would move. But before I could get going she said that she wanted to sit over on the other side and would use that aisle. OK, good. The next was a young fellow in a silver scooter, I rolled down to the front so he could go up and back further. No, problem there. And thus it continued right up to the start of the movie, people with disabilities moving around for each other, making sure that everyone got in and everyone was seated comfortably.

All done with no fuss.

All done with no frustration.

All done without cussing or cursing.

Easy.

I got the sense that we all knew, really knew, how to share space. I felt that each of us was used to being seen as a problem, as using too much space, as needing too many accommodations. It was like we all wanted to show each other the simple courtesy that it takes for things to be done easily.

The movie was awesome.

Joe and I both enjoyed the humour, the story, and the action.

On the way out, it was the same thing, those of us who were using the disability entrance and exit simply managed to do so as if we were synchronised swimmers doing a routine on land, in chairs and walkers and scooters.

Sunday, May 04, 2014

Yesterday Joe and I went for an interview. We haven't had an interview, for anything, for years. Before you jump to conclusions, this interview has nothing to do with work or our careers, but it is an interview that, if successful, could have a real positive outcome in our lives. We felt the pressure of wanting it to go well, and wanting to be successful, and wanting, really wanting, to make the change that would come.

The interview was at two o'clock. We filled the morning by watching the last 2 episodes of The Bletchley Circle and then scrubbing up and getting ready. We didn't anticipate the subway being as busy as it was, and it was a little difficult getting a train, but, all in all, we made the trip with a little time to spare.

As we walked to the site of the interview, I talked about how I hoped they would have a good understanding of 'diversity' and 'difference' when we showed up. I meet such hostile attitudes from people regarding my weight (first) my disability (second) that I always go into things like this with wariness. I knew from the greeting handshake on, that I worried needlessly.

What I wanted to write about here, though, was the experience of being interviewed both as a couple and as individuals. While Joe and I are very different people, when it gets to the stuff we believe, the stuff that matters to us, and the way we look at the world - there really isn't a lot of difference. How we express ourselves or our thoughts is different, our experience that goes with our beliefs is different, but at the core we really are of one mind about many things. I imagine this is true of many couples who have decades and decades and decades and decades of living and working together under their belts.

It was nice to hear Joe answer questions and, as I listened to him, think, 'Yep, that's pretty much sums up how I see it.' I was nice to hear Joe when asked a question when I went first say, 'We've lived and worked together for years and that's how I see it too.' As we aren't often questioned this way, I think we lived with the assumption that we were on the same page. It was nice to realize that not only were we on the same page, we were in the same sentence in the same paragraph.

The folks who interviewed us were wonderfully warm and welcoming, they made a potentially stressful situation comfortable, which shows particular skill on their parts. And now comes the waiting. But even if we don't get it, I'll always be glad of the interview - it was a unique way of checking in with each other, and because of that, it resulted in kind of a nice reassurance, each to the other. We ARE in this together and we are in this for the SAME reasons.

Well, we hope for good luck and a positive result. But, for now, we go on as we go on, knowing a bit more about each other and a bit more about why we've been together for, next month, 45 years.

Saturday, May 03, 2014

She sat with me for a moment, just a moment, and began to catch up with me. We hadn't seen each other for a very long time. I could tell something was wrong and I asked if everything was OK. She told me that cancer was back. When I had first heard about her diagnosis and that she was going in for treatment, I called her. We talked shortly afterwards and she said that the doctors were pretty positive that they'd got it all. Now I learn, they didn't.

There really aren't any right words for moments like these, so instead, I said the usual words. She looked at me with tears in her eyes and then, after a pause, said that it wasn't fair. It just wasn't fair. She was so young, she had always exercised, watched her diet, took care of herself. Her frustration built up as she spoke these words, then she said, "and yet people like ..." (pause) ... "you ... you know, the wheelchair, the weight. Well, its not fair. Just not fair." I swallowed back my shock and slowly we ended the conversation and she left.

I sat there.

Stunned.

I was surprised to hear about the return of her cancer.

Stunned.

I was surprised to hear that it should have been me. That would have been 'fair.'

I have had versions of this for as long as I can remember. Early on in my career when I began to travel and to lecture. A guy I knew pretty well, we would have, back then, called each other friends. Burst out that it wasn't fair that I was getting these opportunities, he had wanted to be a trainer, and he, well, he was trim and fit and much better looking than me. It wasn't fair. Just wasn't fair.

But this ... this was much worse.

I deserve death.

She deserves life.

That's how it breaks down. My fat, disabled body moves me from the category of one who has the same right to life and to love and to purpose to the category of person who is simply expendable. I can easily imagine a group of students given the exercise of choosing which one of the passengers would be thrown off the boat to save the others. I'm that guy. I had suspected all along that I'd be that guy - but now I know, for certain, that I am.

I have always been terrified by the slow crawl our society is making towards embracing the idea that it's OK to kill someone for their own good and for the good of the tribe. I am terrified even more now.

If my value as a working, contributing person, who has social connections, who lives with love at home, who finds joy in his life, who strives to make the world a better place - is trumped so easily by the thin abled bodied, all is lost.

I imagine myself ill.

I imagine people deciding that I need, not repair but elimination. That I need medicine but not the kind that eradicates disease or illness but the kind that eradicates the 'likes of me.'

It had begun as a conversation of two people catching up and it ended with one person letting another know that in a fair world - my life would be taken, swapped for someone more worthy.

In a fair world.

I'd get what I deserved.

Yet people tell me, those who support the kind killing of disabled people, that I have to trust that it would be done in a fair and compassionate way.

Friday, May 02, 2014

"Yes, of course, sir," said the clerk as we checked in. Even though we'd phoned on the way, I always ask at the desk if the room we are about to stay in is wheelchair accessible. I was assured that it was. When we got to the door of the room, my hopes fell. There was only one peephole, the tall one. That's never a good sign. But Joe said, optimistically, "let's just check."

The bathroom had a roll in shower but there was a low toilet and there were no grab bars in the bathroom at all. We went back to the front desk and explained to the clerk, who was chatting with the head of housekeeping, that the room wasn't actually accessible. We explained about the bars. The clerk and the head of housekeeping then chatted with me about how this room and the other accessible room had been renovated some while back and the bars were never put back up. "Others have commented on it," they said.

Thus explained, they fell silent. I think they thought that know that I knew it was accessible once, isn't accessible now, that I would simply go back to the room. I didn't. After a few minutes more of conversation, with me speaking a bit more about the issue of accessibility and 'the right to poo,' action started to happen. Maintenance was called and it was determined that the bars could easily be put back up.

I was asked if I would mind allowing them into the room to reinstall the bars. I said that I wouldn't mind in the slightest. It took about an hour, most of that was comprised of a frantic search for the bars. Everyone who worked on the project, from the maintenance guy who drilled holes and attached the bars to the housekeeping staff who came in to clean up after, were wonderfully nice. Very accommodating and really respectful.

Once they left, I looked in at the newly accessible room.

My initial response, because I'm tired of this kind of thing, was to simply call another hotel and move. But, even though I'm tired of this kind of thing, I wanted to see if I could do something that would save some fellow disabled traveller this kind of hassle. So, I put on the advocacy face and I did the advocacy dance. I said the advocacy words and I did the advocacy sigh. The room was changed.

Sometimes a random act of advocacy can be a random act of kindness.

We forget, sometimes I think, that we are advocating for ourselves but we are also advocating for others who come after us. We forget, sometimes I think, that our actions affect others, many others. Others that we won't meet. That's why we do what we do even though we are tired of doing it.

Those travellers who come into the room and check, nervously, to see if the bathroom is accessible, will never know the story. And that's as it should be.

Thursday, May 01, 2014

The May issue of Service, Support and Success: The Direct Support Workers Newsletter is out ... it's on Medication, Education and Advocacy ... an important read. To subscribe ... just email dhingsburger@vitacls.org and ask for a subscription, if you only want the one issue please state clearly that you are wanting this issue only.

Going anywhere for the first time has an added, um, degree of tension, when you are a wheelchair user. Being told that a space is accessible, you learn about 12 seconds after beginning to use a chair, is no guarantee of accessibility. As we parked on Sunday, outside the church where Ruby was to take her first communion, I wondered what we'd face. Many churches I've been in have wheelchair spaces right at the back or right at the front, either would do for me. When I first saw the church and noticed it was fairly new, I did relax somewhat.

When we went into the sanctuary I saw an approach to accessible seating that I'd never seen before. Imagine a room with pews on either side of a large aisle. Imagine that the pews have a gentle curve to them making them form a semi circle around the alter. Now imagine half way round the curve a cut out row is made such that it looks like a little narrow aisle. When you roll down it, you end up dead centre in the middle of the section, with people sitting on either side of you. Clever.

Or so I thought.

I liked the fact that I was sitting 'in' the congregation, not behind it, not in front of it, but in the congregation. I was able to sit right beside those who were with me. Great. And so it was, until the service started. There was a lot of standing. Whenever the congregation stood I felt isolation like I'd almost never felt it before, I was low down in a forest of legs. I could see nothing. I knew, then, that I would not see Ruby's first communion. But, I told myself, it didn't matter, she knew we were there, she knew we had driven up to be part of the day. That's what mattered.

I did catch a glimpse of her going by holding the candle and I did know when she was up front because the kids names were called. I'd have rather been up front or off to the side, the cool looking accessible spot wasn't actually cool to experience.

But there was another thing.

During communion, which I did not take because I'm not Catholic and I'm kind of unrepentantly gay, everyone stood and the priest said to the congregation, something like, "We stand together as a symbol of our membership in the community of God."

Now I know, or at least I think I know, that he didn't mean that I, sitting in the forest of knees, was not a member of the community of God. But ... that's what the words said. And as much as you can shake those words down, that's what they say.

The priest seemed like a genuinely nice guy and I'm sure that he'd be appalled to think that I thought that he might have meant what the words said. But ... that's what the words said. And as much as he may have protested, that's what they say.

I left there having really enjoyed being there, seeing Ruby so happy, having Sadie make and land a perfect jump and twist to land right on my lap, seeing Mike and Marissa so proud of their daughter. Wouldn't have missed it for the world. But I was also left to think about accessibility, community and the power of words.

Disability Pride

About The Blog's Name

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Dedication

This blog is dedicated, in part, to Neuengamme prisoner 28631.

About Me

Joe and I live in an apartment right smack dab in the center of Toronto. I have worked in the field of disability since graduating from university over 30 years ago. I became disabled a few years ago now and use a wheelchair when out in the world. For those interested, most of my books are available through www.diverse-city.com and if you are wishing to book a lecture or consultation you may do so by emailing daveandjoe@hotmail.com

Best Health Blog 2010

Requiem

There are those who have affected the course of my work and my career. I wish to remember them here:

Stella Young

Manuela Dalla Nora

Bob Clayton

Viktor Frankl

Robert Sovner

Marsha Forrest

Terry Haslam

John Money

Susan Tough

Sol Gordon

Winnifred Kempton

I believe that we should speak often and well of those who passed our way and whose lives gifted us. Here in this space I wish to memorialize those whose lived lives in service to those with disabilities.